Robyn Twemlow – Founder and Executive Director

Christchurch born and bred, I am married to Aaron and we are the proud parents of two beautiful girls, Analise and Eva.

Analise was diagnosed with Tourette Syndrome in June 2013 at age nine. It was a complete shock for the entire family and it has taken us on a journey that has been both difficult and rewarding, sometimes at the same time.

Starting up an organization like the Tourette’s Association New Zealand had never been on the cards but then we’d never expected to be dealing with such a complex disorder seemingly on our own either. As they say “necessity is the mother of invention” or in this case formation.

“The best thing to have happened for people with Tourette’s was the formation of TANZ. Long may you continue to provide this vital service for the children and adults alike. Without it a lot of people would still be struggling and left in the dark.” – Christine Morgan

The decision was made after meeting another mum with a son with Tourette’s and the overwhelming relief that I experienced hearing her story; a story that was so similar to mine. It stood to reason that there had to be other families in the same boat. And there were plenty.

Over the next few months I had many conversations with people who shared their stories with me and I wanted to meet them all. That’s when the idea to have Camp Twitch 2014 originated.

That camp is one of my proudest achievements to date. And that same year I was honoured when a parent nominated me for the Woman of the Year competition, of which I was one of five finalists in the Community category.

My vision for the future is for Tourette Syndrome to be understood, accepted and supported within the New Zealand health and education sectors as well as by the general public; and for those living with Tourette Syndrome to feel confident to take ownership of the disorder.

Tayla Reece

I’m Tayla Reece and I’m the Chairperson for the Tourette’s Association of New Zealand. I am 24 years old and currently live in Kaiapoi, North Canterbury. Fortunately (or unfortunately) I previously shared a working space with the legendary TANZ founder Robyn Twemlow for a few years and am truly inspired by her level of commitment to TANZ as an organisation and advocacy on behalf of people and families experiencing life with Tourette’s. This is what drew me to join the board, as well as an interest in the not-for-profit sector and gaining more experience in this type of role.

I am a qualified Social Worker, and practice as a Youth Worker and Event Manager. My main job is working as the Coordinator of Youth Voice Canterbury which supports young people to have a voice on issues that affect them. This is a skill set and interest that I am keen to apply to TANZ and work with the young people in our membership to empower them to have a voice and be their best selves.

Di Harwood

I’m Di Harwood and I’m the Deputy Chairperson for the Tourette’s Association as well as the manager for Tenants Protection Association. I have a background in administration auditing and more recently in tenancy advocacy. My qualifications include a Diploma in Social Work, a level 4 management Certificate, and I have just completed a Child Protection training course.I also have a 15 year old son with cerebral palsy so I understand somewhat how life is with a child who needs some extra help. I’m keen to contribute to Tourettes Assn NZ because it’s an extremely worthwhile cause and I believe I have some useful management/administrative skills to add to the board. I also have two other girls – 15 and 17 – and when I’m not working or advocating for my son I can be found reading or spending some time in my second home Hokitika.

Lauren Smith

I was diagnosed with Tourettes when I was 9 years old and living in South Africa. In those days it was a very unknown disorder and my parents struggled with the reality of supporting a child with Tourettes and without any support for themselves. When I was young I had a range of motor and vocal tics, some of which became severe during my adolescent years. My family moved to New Zealand in 2002; where I finished high school and attended the University of Waikato. Despite the challenges that we faced as a family, my parents never gave me any reason to doubt that I couldn’t be whoever I wanted to be. As I got older I learned to control my tics, refusing to let them control me. I am now a Registered Psychologist working at the Ministry of Education and live with my Husband Andy, in Cambridge.

I am passionate about the members of TANZ finding support and understanding, not only from the wider community, but also amongst themselves. TANZ provides the means for children and young people, as well as their families, to meet others going through the same challenging struggles. It provides them with a safe and understanding network of people where they can seek comfort, reassurance and help when necessary. TANZ has provided a ray of light to those suffering from Tourettes so that they do not have to travel, the often dark road, alone.

Rinea Robson

I’m Rinea, and I have the dual roles of secretary and treasurer. I’m a self employed Chartered Accountant based in North Canterbury. I am also a Mum to two beautiful children one of which has Tourette’s and ADHD who was diagnosed at the age of 5.

I first became aware of the Tourette’s Association and the wonderful work they do when our son attended Camp Twitch. The Association has also helped our family with resources and support for both living with Tourette’s and for making our way through the school system.

I currently sit on two other boards and joined this team to provide my experience and professional advice particularly around the area of funding and finances.

You may also on occasion spot me behind the camera at Camp Twitch with photography being one of my hobbies.

I am an advocate for supporting community groups and not-for-profit organisations. I think its important for each person to use their skills to help play their part in the wider community. On that note I look forward to serving this association with the best of my knowledge and capabilities.

Chad Blair

I’m Chad Blair and I have two awesome daughters. My eldest developed her first tick at age 4 and was diagnosed with Tourette’s at the age of 7. It was around this time that I found out about TANZ and have been impressed with the passion everyone has for this cause and wanted to get involved more with them.

I am currently on the board of the Hoon Hay Community Association and also Hillmorton High School Board of Trustees. My key strength is strategic planning and I hope to provide guidance in this area. My goal in joining this team is to help grow the organisation to help and support more people with Tourette’s to enable them to live their best life possible.

Andy Norton

I am 40 years old and live in Rangiora with my wife Fiona and two daughters Caitlin and Hannah. I was diagnosed with Tourette’s at age 13, although the symptoms first appeared at age 7. I am fully aware of the daily challenges that people with Tourette’s face each day.

Despite having Tourette’s I was able to achieve my goal of joining the New Zealand police. I am currently a police sergeant in Christchurch and have been a police officer for over 13 years.

I was really inspired by the association after watching the Camp Twitch 2016 documentary and wanted to become involved to help raise awareness and education about Tourette’s.

This is my first year on the board of TANZ and am really looking forward to contributing to the organisation moving forward and letting those with Tourette’s know that it doesn’t have to stop them from achieving what ever they want to achieve.

Contact

For any queries or complaints about the governance of the Tourette’s Association NZ, please email the chair Tayla Reece taylareece_@hotmail.co.nz.

For information or queries about Tourette Syndrome, advocacy, help and support please email info@tourettes.org.nz

Analise Twemlow – Youth Ambassador

In 2013, at age nine, Analise was diagnosed with Tourette Syndrome.

From very early on Analise decided she wanted to tell people why she did some of the things she did. She wanted people to understand her as well as other kids who had tics just like her.

Ethan Downey-Parish – Youth Ambassador

Hey guys, I’m Ethan. I’m 21 years old and I live in Auckland. I’m a leader at a youth group known as ‘HWK’. I’m currently studying a Diploma in Audio Engineering and then onwards to a Bachelor of Recording Arts. I also write music with a good friend of mine as music is a big passion of mine.

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Disclaimer: The views and opinions expressed on this site are those of the individual authors and not necessarily those of the Tourette’s Association New Zealand unless specified otherwise. The material provided is for information only and not to be used for diagnosis or treatment purposes. The information provided is not a substitute for professional care in the diagnosis, treatment and management of genetic conditions.